Non-stop RLS

[Akhan_81]

Does anyone have non-stop RLS pain? My legs hurt 24/7 and have been that way for the past 4 years. I don't get any relief at all. I think I have a severe case of RLS but I'm not sure. Is it common for there to be pain 24/7? I've tried many different methods of relieving the pain but none had good enough effects. The only thing that worked was massaging my leg but it only brought the pain from very severe down to severe. I've had the pain for 6 years but at first it was on and off. For the past 4 it's been non-stop. Up until this year my doctor kept saying it was growth pain, but now he finally realized it was RLS. We're still trying new treatment methods because none have worked very well. Any suggestions would also be useful

[ookla]

I have RLS pain 24/7. The only thing that's helped is tramadol or oxycodone. I'm worried about building up a tolerance and losing the ability to fall asleep at night, so I only take medicine before bed and just suffer all day long. I really hope you're able to find something that works for you. Good luck!

[Hidden]

Oh man I know that feeling, how bloody awful for you. But on the bright side you've a hell of a lot of knowledge here.

For my part let me advise hot baths - as hot as you can handle and plenty of them - an absolute God send for me.

In the drug field as ookla has said Tramadol is fantastic for it kills pain and eases the restlessness.

If you don't want opioids/opiates you can look for dopamine agonists - Mirpexin or my drug de jour the Neupro patch - although a pain in the a$$ when getting in and out of hot showers/baths.

On the herbal font you have hte old reliable Cannabis, (although not always easily available due to ignorance and corruption!) and Kratom which I can say without hyperbole saved my life!

There are also oils - Night time clam I think that can help if massaged into the bottom of the back - although he massage is probably more effective than the oils.

Good luck and be happy your suffering is nearer an end now that you are on here!

[beady3]

Hi Akhan, I know just how you feel but let me tell you after 30odd years of having rls I am now on Tramodol please try it I know it will help you,if I take them on time you wouldn't know I had rls but if late it's back. Let us know how you get on but if you are still suffering go back to docs but go prepared as they don't know a ot about the complaint x

[gypsy49]

I've had RLS since 8yrs old now 51 gotten worst as i got older now 24/7 no peace nothing works for me so far sometimes hot baths works but not always at sometimes only 8hrs a week sleep more often than not ggrrr have tried every meds going so far nothing worked think my neuro dr given up on me now . Hope you find something that works for you Good luck x

[Hidden in reply to gypsy49]

Gypsy if you haven't tried Tramadol as beady3 suggests please try it - I know for me while it worked it was amazing.

Also look into Kratom, I used it daily for almost a year there and it was a god send, (there were many many dark nights when things were very bleak for me) and I've said it before I do genuinely believe it may have saved my life.

I was talking with a neighbour yesterday and we got talking about health and the RLS and he said 'Aye, I get that at times I find it hard to settle in the (works) van.' Now to me that is comparing a head cold to a sledge hammer to the groin - both cause some degree of discomfort!

People just do not seem to understand the pain and torture that this condition is -often us the suffers don't! Its only after we get some relief that we realise just how 'far through' we are and how we were merely surviving instead of living. I've lost count of the number of times I've stood in hot showers until the water tank went cold or lay in a bath that hot to ease the pain that I got out to throw up and lie on the floor as I hadn't the strength to dry myself.

I've lived with this condition literally longer than I can remember, (my mother told me how I was always at the Drs with 'growing pains'). Forty odd years on and the Drs seem to know just about as much

If nothing else being on here will allow you to know you are far from alone on this journey no matter how forsaken you will feel in the 'wee hours'.

I hope and pray you find relief.

[gypsy49 in reply to Hidden]

Hi Raffs

Tramadol like taking sweets don't do anything for me zilt... hot baths hit and miss sometimes works sometimes makes worst . my mother could never understand why i'd get up with bruises on my arms or legs me banging hell out my legs ,putting my arms each under side of the bed and pulling like mad like you growing pains! . I don't come on here often been nearly a year since i've been on till other day because of certain people on here can't be doing with folk that try ramming things down folks talking them down specially new folk sadly these sort of sites you get the couple of oddballs that ruin things they think they're doing good.

I know trying to explain to someone what RLS can be a pain in it's self i dont bother if they don't get it first time round only way anyone can understand it is by seeing it first hand my own father doesn't understand but then he doesn't understand what deafness is lol so no way will he understand what RLS is i usually tell folk to read it up much easier or a cop out on my side lol.

same to you sweet hope you find relief and hopefully one day they find a cure or even the full cause of it till then no cure . Enjoy the rest of your weekend x

[Hidden in reply to gypsy49]

Pity the Tramadol doesn’t work it’s a handy number!

At the risk of labouring the point – I cannot begin to tell you how effective I found Kratom. Having RLS my entire life it was the first time my body was truly quiet. I can still remember the feeling - I was like Pinocchio all amazed at my new quiet body 

After trying Mirapexin ,Tramadol, Codiene, cannabis, a slew of antidepressants, Baclofen, Gabapentin, Lyrica, Reiki, aromatherapy and prayer it has been the only thing that worked without causing any nasty side-effects, (or without me having to go to a Dr begging for help!).

I am on the Neupro patch now so I can sort out a few other health problems, (need to get a good understanding of what problem is effecting what other problem) and to make sure I don’t become too immune to its effects, but I still have a good supply at hand for when needed.

I took it daily for a year and stopped without any difficulties, unlike the withdrawal from Tramadol – great drug if it works but a bitch on the other side – I decided to stop cold turkey and it wasn't a walk in the park (no pun intended).

There is enough info out there, I believe, to make an informed decision and if you are interested here is a good starting point:

erowid.org/plants/kratom/kr...

Take care and may you find respite soon.

[gypsy49 in reply to Hidden]

Have tried the Neupro patch sent me up the wall lol made the RLS 100% worst as if it isn't bad enough haha laugh or cry rather laugh ...

Walk in the park lol love it most meds i've tried i just stop taking can't be doing with slowly doing things but thats how my life is fast track or nothing to many drugs to be trying it's finding the right combo that's hard plus dosage a little to much or not enough .

I'll have a neb at the link you've put later grandchildren here at mo easier to read when alls quiet lol .

at the moment im on gabapentin and something for folk take for fits (forget name will look in bit) bit hit miss with them more miss than hits although makes my balance a bit like im drunk only take at night im suppose to take gabapentin few times during the day i'd never get anything done if i did .

I'll read and reply properly later little ones needs sorting .

hope your day goes well x

[nightdancer in reply to gypsy49]

Gabapentin is a anticonvulsant, also used for nerve pain. So it is an Epilepsy drug also, for seizures.

[gypsy49 in reply to nightdancer]

yeah i know Gabapentin is used for nerve pain helps me a great deal for the sciatica and Trigeminal neuralgia not had an attack since being on them neuro dr wants me to come off the gabapentin im not risking it not when it helps with other problems the one i couldn't remember the name other night was Clonazepam im taking thats the one used for epilepsy (which i don't suffer with )

[Hidden]

Akhan, you are obviously young, and many of those of us replying to you are much older. The first question your GP or MD should have asked was - what are your iron levels? Did he test your serum ferritin level over your teenage years? What was it? Do you have any copies of your results? How old are you now?

Restless Legs Syndrome is closely linked with low brain iron according to the research, and the Johns Hopkins Insititute which is a leader in the field says so. For older people it may be too late to reverse damage done long ago, and reliance on drugs may be the result. There may be a chance with you of getting your iron levels to a point where the RLS is dealt with, and you do not have to depend for the rest of your life on drugs, but it will be a slow process.

[cumoneileen]

I only suffer from RLS when I am resting ie. sitting for a while or in bed. The only relief is to walk about. I walk about a lot in the evening. I do not get pain as such but a gurgling in my legs and cannot control the jumping. I have had it for 50 years it gets much worse as you get older.

I take ROPINOROLE AND 1 CO CODAMOL. they do help.

[gypsy49]

hmm.... why don't you share on here for all to see rather than email you ?

[Hidden]

I'm with Gypsy if you have suffered you would easily share your information here like many others, BUT I will email you give you an opportunity to make good on your claims.

Message sent - I look forward to your speedy reply

[nightdancer]

Do you help people for the sake of helping? Sounds like you will be selling something, instead of trying to help out your fellow RLSer's. You still have not described your RLS, and why did you join this group a couple of days ago, if you have no more RLS. Must be to make some $$$$

[nightdancer]

I am NOT going to email you, but tell us what you are talking about.

[nightdancer in reply to nightdancer]

I see the fox the medicine man is gone. just wanted to say that so our comments do not look so foolish here like we are talking to nobody. lol

[nightdancer]

We do not sell things here on this forum and we do not do "magic cures" Stop advertising whatever crap you are trying to convince us that we need nothing else besides you. How do YOU have all the "secret" to curing RLS, when no one else does??? hmmmmm???? Been down this road waaaaaaaay too many times with snakeoil. If you give us a general idea of what you are talking about, we cannot just take your word for it. Do you have a web site set up so we can have something to look at besides only your email and the fact that you call yourself the "medicine man". We are not stupid so how about some info and if you do not want to give information to the entire group, that is a huge RED FLAG, just sayin...................................

[Hidden in reply to nightdancer]

Speak for yourself nightdancer - I'll do magic cures if anyone has one

[Hidden in reply to Hidden]

So would i if it worked and i didnt have to pay someone who is going to make a profit from me. Anyone got a magic wand...?

[nightdancer]

Fox, you are the ONLY person in the world with the answer!? Lucky us.

[nightdancer]

Yes, you would gladly share your information if you have REALLY suffered from RLS. If I ever found the cure, I would be shouting it from the rooftops, not trying to rip people off. that MUCH is clear. have heard it a hundred times, at LEAST. Fox 1990, you are a sham of an RLS patient and you WOULD share your info if you truly had suffered.

[Hidden]

Blimey.!! Fox1990 sure is pushy..!! Raffs please let us know what reply you get back from your email. This shouldnt even be allowed on here, advertising a product is a no no for the forum.

[Hidden in reply to Hidden]

OKJ folks in the interests of honest and openness I include the original reply verbatim, (I can send a screen shot if required for proof but my mind is foggy today so you'd have to wait!!)

"My patent is pending for a product that is going to help anybody with RLS problem and there is no need for pill popping just like the big pharma love you do do for the rest of your life killing your liver without mercy I say for about $ 15 -20 you will be able to sleep well always for the rest of your long life.

currently I am searching for good investors so just be patience just a little longer OK .

thanks

\fox"

Fox I do wish you the VERY BEST of success but you are more than a bit premature with your posting here - if you are still looking backers, then there is a place to produce, transportation, retailers, etc that will have to be researched. That's A LOT of patience being asked there

SO there we have it Elisse, we'll be walking the floors for another while I'm afraid

[Hidden in reply to Hidden]

Thanks raffs. well emailing him didnt help much did it. lol. Unless he thinks we will be his backers...

Yep, your right, will be walking those floor for a long time to come yet.

[nightdancer in reply to Hidden]

you got more than I did, Raffs! LOL he did not tell me he was looking for backers. I posted above what I got. Kind of hard to follow his spelling and grammar. I am thinking he is German. Been doing research today and ran across someone who sounds like the FOX. What a load of rubbish. Well, it appears he is now gone. thankfully.

[Hidden in reply to nightdancer]

At least I disn't get any hopes up.

IF he is sincere in his efforts then I wish him all the best as any drug free option at that price even if it only helps and doesn't cure will be much appreciated - however between the 'email me' and lack of appropriate response, (could he not just have taken a poll?) he does not seem that genuine.

[nightdancer in reply to Hidden]

Definitely NOT believing him for a second. I never did. Still looking for backers, ha! he is waaaay ahead of himself.

[Hidden in reply to nightdancer]

Could maybe back him off a cliff?

Yeah waaaayy to far ahead. I would imagine there is so much to do with the stage he's at you are looking at years as opposed to weeks or months.

I've no experience but I would put good money on the fact that with no backers at this stage, (putting it about on RLS forums) there is unlikely to be any.

BUT if you are still reading foxy take a look here

kickstarter.com/

Mind you if you were serious I would imagine you would have already registered there - I've no intent of starting any project and I am aware of it so I would imagine if he was really trying to raise money he would be on there.

[nightdancer in reply to Hidden]

ah! Extremely good points! Oh yes, we are talking years and he better not be his own salesman! LOL

[Hidden in reply to nightdancer]

A salesman he definitely isn't - if he couldn't engage people suffering enough to come on here then he's on the road to 'no town'!

[nightdancer in reply to Hidden]

he has rejoined under another name, but continues to email me. Now he is just being harassing calling me a "Big Pharma troll" LOLOL REALLY nice.

[Hidden in reply to nightdancer]

Ah man I didn't know you worked for Big Pharma, (spits).

Time to get the voodoo dolls out methinks!

[nightdancer in reply to Hidden]

ha! I will go get my voodoo dolls! lol

[nightdancer]

Fox1990, describe what your RLS was like that made you start to research this for FIFTY years. Must have been hard to do research with no internet and no foundations or groups, etc. Must have logged many hours in libraries, because it would only have been books to do research with waaaaaaaaay back then. But would LOVE to hear about YOUR RLS.

[nightdancer]

HI, Akhan_81 first let me apologize for the FOX hijacking your post. You have not said what you HAVE tried. it would make it a bit easier if we knew what you had already tried so we do not repeat things you may have already. You can have RLS 24/7 but usually it is a certain class of meds that will cause that if you are on too high a dose. Some people just have it 24/7 for no good reason, but some reasons can be pinned down.

[Hidden]

Hi, I find that having a warm foot bath before going to bed can help, but then again I only get rls when I lay down to sleep. Yours sounds chronic but what's works for one person may not work for another.

I was advised by a young girl who works in a well known Heath store to get myself a magnesium spray to use at night as she said she used it while pregnant and suffering from similar symptoms. I also found it to be a great help and use it on a regular basis. Anything is worth a try good luck x